Something that I am finding really tough is that there isn’t a fix, some medicine, a magic cure or anything at all that would help Dylan to experience a ‘normal’ life.
I love my boy, my little buddy, my curly fro, chum, cutie, handsome little man; my son.
Though if I could take this all away from him I would.
This can’t be an enjoyable life for him, he can’t communicate with me or anyone else at the moment. He doesn’t understand emotions, boundaries and many other things.
He gets so frustrated he self-harms by head banging, hitting himself in the face, grinding his teeth, throwing himself on the floor, diving at the floor head first, He also has self stimulating behaviour a lot because this world causes him to have far too much sensory input, he can’t deal with it like you and I can.
He doesn’t enjoy going out to soft play, when we go for walks he likes to stay in his pram- his little safe space, he hates going to the shops and I now only go if he is sleeping, or can be left with my husband, safely at home.
He can’t stand change, we have to keep a very strict routine otherwise it is chaos. He wouldn’t sleep, in fact sometimes he manages to run on as little as four hours sleeps for a whole day and will keep this up for a week sometimes two untill we get him back and sorted.
What he enjoys the most is being in the house playing with his letters and numbers. Though it has to be all three packs of letters all spread out across the floor and sofa, with the numbers out as well. Generally the same letters are all placed together, and so help you if you move one that he has strategically set down. His new favorite is this set of barrels he has that are like russian dolls, they all go inside each other. The first time he found these, he spent the whole day playing with them and I must have put them back together and inside each other about 500 times, it was draining. He was happy though so I did this, and by the end of the day I was mentally exhausted. I had to celebrate and joyfully tell him what colours they were, and cheer him each and every time he opened one. This doesn’t sound too bad does it, it’s not, untill you do it for an entire day.
He has meltdowns on a daily basis, when he has a meltdown he gets so confused. He wants picked up, but he doesn’t want touched so he hits out, throws his head to try to headbutt, screams uncontrollably, when you put him down he head butts walls, he hits himself in the face and throws himself at the floor. He grabs at you to be picked up again and gets really mad if you don’t but then, when you do it makes him worse again. We have a beanbag and a soft play mat so that we can put him down and he wont hurt his head and extra tall baby gates so that he can’t escape and get outside to where he would be in a lot of danger as he has no sense of fear or safety. What settles him will change from day-to-day, we have lots of tricks that we try, but as a parent it really pains when you can’t just scoop your child up and comfort them.
When they don’t find comfort in their parent, in you, it’s very tough.
I love him with all of my heart, and I will always do anything and everything to help him. I will enable him to have the best life he possibly can and to live it to his fullest potential. I will fight all the battles for him that he isn’t capable of fighting for himself.
I will make this all work out ok. I’m not in denial I know it will be a bumpy road, I know it’s not going to be easy on me, my husband, my daughter or our families.
We can do it.